I'm dying of ALS, here's why health care will decide my last vote

I'm dying of ALS, here's why health care will decide my last vote
© Greg Nash

I am dying from ALS — a disease that affects the nervous system by weakening muscles and impacts my physical functions — and over the summer, I spent some of the last few months of my life traveling from coast to coast to tell my story and speak about why the fight our health care is so important.

I’m outspoken about my personal life now, but that has not always been the case. Before October of 2016, I was living a regular life with my wife and son, but as is the case for many Americans, a medical emergency changed everything for us.

From day one, my doctors have been clear with me. My ALS diagnosis means I don’t have much more time left to live — and although I want to spend as much of that time as possible with my wife and son, I decided to speak up.


Around the time Republicans were talking about passing their tax bill that things changes again for me. The bill threatened the health care of millions of Americans — including me — who rely on the Affordable Care Act to stay alive and avoid bankruptcy.

There was too much at stake for me, and so I went to Washington to make the case against the tax bill. I even pleaded with Sen. Flake on the flight back from Washington to vote against the bill. But when the time came to vote on it, he ended up supporting it.

Since then, the attacks on our health care have only continued.

From lawsuits that endanger protections to people with pre-existing conditions, legislation that would leave less Americans, not more, insured, and even slashing advertising budget for outreach, Republicans have shamelessly used every tool at their disposal to try to tear health care away from millions of Americans.

Their sabotage has affected on the life of every American. Last year 3.2 million people lost coverage, and premiums for others have skyrocketed. For families like mine, these increases can be the difference between access to lifesaving care and not. And most recently with the Kavanaugh nomination, Republicans have made it clear that the only thing they care about is undoing the progress the Affordable Care Act ushered in.


I can no longer walk, and I’m finding it harder and harder to speak, but as I was reminded on my bus tour over the summer, this isn’t just my fight. I’m rallying with 130 million Americans who live with pre-existing conditions and the families struggling to afford skyrocketing insurance costs.

And now, as we get closer and closer to election day, I’m trying to mobilize a million Americans to head to the polls this November and hold every Republican that has pushed for these policies or has chosen to stay silent as these attacks increased accountable for the attempts to strip us from our health care.

Republicans may think that we’re not paying attention to their cruel obsession with taking away our health care, but we are. Not just because poll after poll tells us that health care is a top issue in the upcoming elections, but because no matter where in the country I traveled, and no matter who I spoke with, one thing was clear: the American people are tired of fighting against a Congress that ignores their well-being, and they’re fired up about it.

I don’t know how much longer I have to live, so I am counting on you to join me holding Republicans accountable for their actions. The time is now for us to get organized, pumped up, and get ready to vote this November so we make ourselves clear we will not allow our health care to be taken away from us.

Ady Barkan is the founder of Be A Hero Campaign, a co-director of the Fed Up campaign, co-chair at Health Care Voter, and a senior organizer at the Center for Popular Democracy.